When questions have no answers.

 

Bad things happen. Sometimes bad things happen to our children. And in those moments, we all become children again ourselves, with the ultimate question drawn out of the deepest part of us.

Why?

Why is this happening? Could I have prevented it? How can I fix it? But the sad truth is, most of the answers to these questions are no answers at all.

My daughter has autism. Lots of people claim to have answers; diet, vaccines, medication in pregnancy, genetics. Some are clearly snake oil, others genuine, but none offer more than partial explanations.

These existential queries are, for parents, mostly irrelevant; a luxury. Even in the midst of this first questioning, you move quickly to the practicalities. Helping your child get better. Helping your child do more. Helping your child have something approaching the life you had always pictured for her.

But things far worse than autism happen to children. Devastated as I was to learn that my child had a lifelong developmental disability, my own dark optimism quickly went to: at least it’s not cancer; at least it isn’t fatal. The vast scope of things more devastating by far made me grateful, in a way, for our own smaller tragedy.

With terminal or critical illness the parents ask those same questions--why has this happened? what can I do? -- but the answers are very different. Biomedical problems have a lot more research that can tell us why, or at least point to a cell that went wrong, a germ that took over. I sometimes envy those families their answers, even if the diagnoses I would not wish on anyone, ever. The clarity of what is happening, even if what is happening is too awful to bear.

To live in the ambiguity of an autism diagnosis is it's own special torment. We celebrate each new word, each development in skill, but still have no long term prognosis. Is this progress fast enough to hope for an independent adulthood for her? Are we pursuing the best combinations of therapy?

No answers. 

By contrast, it seems that clarity in diagnosis, cause and prognosis brings some clarity of what to do next. 

Except sometimes the ‘what to do next’ doesn’t remotely fix it; can’t make it better, and all the answers in the world can’t put things right.

Bad things sometimes happen to our children. It strips us of our innocence; our confidence in the natural order of things. And we look around each corner, waiting for the other shoe to drop – if this horrible thing can happen, what’s next?

We become parents, and our lives are changed forever. We become parents of a special needs child; a child with a life threatening or life ending condition; a child who is irrevocably changed by some freak accident; and for a time, sometimes a very long time, our lives simply stop.

Frozen in the new geography of life as we now must know it, the answer to these questions, ultimately, is the same one parents all over the world offer to the “why why why”s of their preschoolers:

Because.

And we know, as every child knows, that it is a lousy answer.

So what we come to, questions standing unanswered, is that without rhyme or a good enough reason, life keeps moving. And as we begin to move around our world as it stands now, we notice that there are other people in this place. People who have had to pick up and move on in the midst of the deepest grief there is. People who know the 'Before' and 'After' of life changing news. I paraphrase a dear friend when I say that this isn’t a club I wanted to join. Yet once initiated, there is strength in the connections to be found here.

The grief doesn’t go away. Kids who are my daughter's age who have typical language and social skills still break my heart sometimes, just being their great kid-selves. For me these moments often stir more questions- how close to typical will she ever be? Is there a child like that trapped behind my baby's autism? 

I imagine parents who have lost a child continue to mark the milestones that will never be- first steps, first day of school, graduations, maybe a wedding. I anticipate doing so myself, knowing that she will pass some of these milestones, but so far from us in her own world, and so far from what we had hoped for, in the time 'Before'. These are moments of ongoing grief; an ongoing wishing for a different end.

But in the midst of all of this, we get out of bed (most) every morning; we breathe in and out all day long…and try to do the best for ourselves, our kids, and our families. We gather our strength, and gather our people – the people who have been with us all along, as well as those who have come by way of the very challenges they now help us weather.

Parents like me, whose children have a lifelong challenge, have a lifelong challenge of their own. My role as autism-mom has been all consuming. But I think I owe it to myself, to my husband and to both my children to carve out a full life for myself. All the angst of mothering and working are amplified by the special needs of my daughter. From the practical - the 'replacement cost' of my childcare work is high. To the emotional-  there is no replacement for my direct involvement in the day to day coordination of her therapies. But angst or not, I believe it is important that I don’t always feel that my life has been hijacked by my daughter’s autism.

But how lucky I am that this is my challenge. For parents whose child will never come home, their ‘new job’ is made harder by its invisibility. Parenting a child who isn't there, because how do you stop being a parent? They must learn how to deal with their own grief alongside the grief of their partner, possibly their other children. They will see that the outside world moves on so quickly, and other people won’t understand how long this will feel brand new. They will feel resistance to a return to normalcy so strongly – as it is emblematic of their growing distance from life ‘Before’; from life when their child was still alive and full of potential.

But life does keep moving, and we do become acclimated to our new lives. We never regain our innocence; we are marked by grief; but someday we will revive our confidence in life. A life beyond the diagnosis, beyond the moment when you knew everything had changed forever.  So that we might actually, eventually, ask with optimism: what’s next? We will be able to see once more that while bad things do happen, mostly it’s not so bad. Sometimes even good. And we can move forward, strengthened, to begin building a life, a whole life, grief and all, that works in this brave new world.

 

 

‘Life is a game. Money is how we keep score.’ – Ted Turner

(also attributed to my friend Jane J )



Nothing to do with work -
Me on the Brooklyn Bridge

I struggle pretty regularly with the fact that the primary work of my life at the moment (and my longest running ‘career’) is unpaid. My husband and I have a very traditional social contract in which he earns enough money to support our family and I am on the front lines of childcare, and to a lesser extent, housework. There are some very real practical implications of this choice for me, in terms of future earning potential and cost of delaying retirement savings. However, the crux of the problem at the moment has more to do with psychology than finance.

Because financial considerations are not currently pressing, I get to explore my options regarding a return to paid work that prioritizes an increase in my happiness more than in our bank balance. To that end, I have been reading a book called ‘The Joy of Work?: Jobs, Happiness, and You by Peter Warr and Guy Clapperton. Peter Warr has done research into job happiness for decades, and has also written a much bigger, and much denser, textbook on the subject. In this more user-friendly model, the two authors identify 12 things that are important to job satisfaction (including such things as money, valued role, reasonable and safe work environment, etc.) I am finding it very helpful in exploring the idea of returning to paid work.

However, I felt that the two areas of value and money were not addressed well in conjunction with each other. I agree with their assessment that once you are reasonably well off, additional money doesn’t add drastically to your happiness. But the happiness leap between poverty and reasonable income is significant. Then, presumably because the money issue had been covered, it is not discussed at length in the section that articulates a need for a ‘valued role’ in your workplace. They do not address the way that being paid for your work is part of how the value of work is expressed. Of course there are many examples where the market value of skills doesn’t reflect the actual relative value of the job (ex: school teacher vs. movie star.) But as a general rule of thumb, there is correlation.

My happiness, according to the discussion by Clapperton and Warr, should not increase significantly should I receive reasonable money for whatever job I choose to pursue. However, I am pretty sure that being financially compensated is crucial to my happiness with that job. I am not poor. I can afford to eat at nice restaurants, travel a bit, and I don’t have to worry about affording things for my kids. But my personal life score in terms of dollars in, dollars out, is deficient. There is a poverty of recognition at play.

That poverty of recognition is exacerbated by two things for me – 1, in the broader culture, being a stay at home mom is not valued and 2, I don’t especially enjoy the job and I don’t feel that good at it.

The first of these is a little tricky. The media fueled “Mommy Wars” in which stay at home moms feud with working moms about who is doing it right, and which way is harder, is disheartening to say the least. And while there are pockets of support for the value of full time mommy-hood, they aren’t my people. I am not religious; I am not socially conservative; this is not what I wanted to be when I grew up. Feminism, I sometimes feel, is kind of a bitch on this subject. In the push to give women opportunity in the workplace, they added to the disrespect for the things that are traditionally ‘women’s work’. I have never been to a party in which the what-do-you-do followed by the I’m-a-stay-at-home-mom does anything but stop conversation.

"Not Rocket Science"

In some ways I can’t blame them. I find much of the job to be boring and repetitive (see number 2 above.) There are parts of my job that are hard, but so much of it seems like it should be easy – wash and fold laundry, load the dishwasher, etc. But I am still not good at getting them done. Not awesome for the self-esteem. And if laundry, diapers and dishes is what the phrase ‘stay at home mom’ conjures, there isn’t a ready follow up for the cocktail party convo.


"Things I am not good at" (this was the 'after' cleaning picture)

Then there are things that I really can’t tell if they help or hurt my mommy-morale. One is that I didn’t have an established career before taking off work. That means that a return to work is an entrée into a new field of some kind. At age 37. I have a degree in history, of little use. And I am qualified to be a midwife, but that is imminently impractical for life as it has unfolded for my family

Which leads to the elephant you didn’t know was in the room – my daughter’s autism. She is a big reason why midwifery won’t work right now (for the next decade at least), and she is a big reason why it is hard for me to conceive of hiring out the bulk of my childcare duties. I want to be the one who is picking her up from preschool and therapy – to directly track her progress and programs, coordinate everyone’s efforts. (Though I would be ok if that person was her dad, though market value of our relative skills makes that unfeasible.) But she is also why the job is harder.

So, I am stay at home mom (to 2 children), housekeeper (only marginally, thank you husband-who-likes-things-clean), and also unpaid education and therapy coordinator for an autistic child. None of these roles has job training, professional status, or income. Intrinsic value, yes. But not so much that it alleviates that poverty of recognition.

My son, 10, still sometimes misspeaks and asks ‘How much is it worth?’ instead of ‘How much does it cost?’ So, he has heard our little mini spiel about the difference between cost (money) vs. worth (value) many, many times. I am starting to wonder lately if I have been listening to what I have been telling him all these years. Separating value from dollars is very hard to do. The notion of scorekeeping is hard to shake. Perhaps there is a way we can change the game?

  


The family feet

 

 

 

 

Last month my husband and I got married….again.

We met in college, while I was travelling in Europe. We did the long distance thing for a while, bounced back and forth across the Atlantic. Then, twelve years ago, we stood up in front of my parents and his close family and promised to love, honor and cherish per the legal requirements of the Irish government. That quick conversation with a bureaucrat meant we were then free to build a life together- his country or mine.

 

We didn’t exchange rings that day, because that wasn’t supposed to be the ‘real’ wedding. At that point we expected to throw the big party within a year or two. Fast forward many years later- we had been distracted by such things as having babies, going back to school, and just plain not having enough money for such indulgence. But finally, sometime last spring, in a fit of love and madness, we dove right in to that frivolous activity of wedding planning.

 

To most, the right term for what we did was a vow renewal. But for us, it really was our wedding. The first time around, our intentions were earnest and sincere, but ultimately practical. The ceremony was more far meaningful than either of us expected, but we didn’t decide what to promise; we didn’t invite all the most important people in our lives.

Now was the time, at last, to celebrate our love; to exchange personal vows in front of our chosen community. And to have a killer party.

We are godless by choice: atheists, skeptics, feminists, “evidence based” everything. The traditional structures of vows to exchange wouldn’t do. Evidence guides us everywhere else; why not evidence based vows?

The Gottman Institute, based here in Seattle has spent decades researching couples’ interactions. On the strength of observing a single conversation, founder John Gottman can predict if a couple will divorce in the next 5 years.  From the research, Gottman identifies seven things necessary to sustain a strong and lasting relationship; published in his book, The Seven Principles for Making Marriage Work. (John Gottman & Nan Silver, 2005)

Those principles are:

1. Enhance Your Love Maps. Gottman defines a love map as the place in your brain where you store information pertaining to your partner. This is crucial in really knowing your partner, their dreams, hopes, interests, and maintaining their interest throughout the relationship.
2. Nurture Your Fondness and Admiration. This means laying down a positive view about your spouse, respecting and appreciating their differences.
3. Turn Toward Each Other Instead of Away. Acknowledging your partner's small moments in life and orienting yourself towards them will maintain that necessary connection that is vital for the relationship.
4. Let Your Partner Influence You. It is important to maintain your own identity in a relationship, but it is equally important to yield to your partner and give in. If both partners allow one another this influence, then they will learn to respect one another on a deeper level.
5. Solve Your Solvable Problems. It is important to compromise on issues that can be resolved, which Gottman believes can be accomplished by these five steps: soften your startup, learn to make and receive repair attempts, soothe yourself and each other, compromise, and be tolerant of each other’s faults.
6. Overcome Gridlock. Major issues that cannot be resolved because both partners’ views are so fundamentally different involves understanding of the other person and deep communication. The goal is to at least get to a position that allows the other person to empathize with the partner's view, even if a compromise cannot be reached.
7. Create Shared Meaning. Create a shared value system that continually connects the partners through rituals/traditions, shared roles and symbols. (summary from the book pulled from wikipedia)

These are the vows we wrote, referencing the principle it reflects:

I will endeavor to know you better than anyone in the world, remind you how amazing you are and always brag about you to my friends. (1&2)

I promise to always give you the benefit of the doubt, and to respect you, even when you are clearly wrong. (4, 5, 6)

I promise to be present for the small things that mean everything – family dinner, silly TV shows and trips to the zoo with the kids. And I look forward to sharing all the big things yet to come. (7)

I promise to be your first line of support when things get crazy – always always in it together. (3)

I promise to be open to change and accept your influence in my life. (4)

I promise to fight fair, and to practice giving and receiving apologies with grace. (5 & 6)

I promise to stick with it when the conversation gets hard, even if we disagree, you are still you to me. (5 & 6)

And always, I promise to be a witness to your life – in sickness and in health, in good times and in bad. For as long as we both shall live. (1, 2, 3 & 7)

_________

 

Wedding achieved, I am now a hands down advocate of the decade-in wedding. The vows and the ceremony and the day reflect a richness of a life shared and a still optimistic promise of continuing romance.  

We wouldn’t have really understood these vows on that day back in Dublin when we first said ‘I do’, much less be able to write them. The days of a bride and groom meeting on their wedding morning are long gone. Today the wedding should be a reflection of an already solid relationship, looking forward to building a life together, to becoming each other’s family. Thirteen years after the proposal is maybe extreme, but life happens.

When I looked back on our vows a couple of weeks after the wedding, I realized we had not promised to love each other. I wondered briefly if we should have a do-over, or if this indicated some deep problem in our relationship (hands up who is prone to overreacting). But my husband pointed out that you can’t fulfill our vows without loving, and that the ideas behind the vows are intended to strengthen and sustain love.

 

So, yeah. I’m good.